4 year old with encopresis (new here)

Discussion in 'General Parenting' started by lakerhart, Oct 26, 2009.

  1. lakerhart

    lakerhart New Member

    My dd was diagnosed early this year with encopresis. She turned 4 in april. She soils daily and sometimes up to 4 or 5 times daily unless I give her frequent (1-2 times a week) enemas which are pure hell for both of us.:faint: I had her on miralax for the first 9 months or so after she was diagnosed and all it does is make the soiling messier. She still has enormous poops that were obviously saved up for a while after I just give her miralax. I am quickly losing patience. Not that I want to but I have never dealt with anything more frustrating in my life! She fights like a madwoman when I give her the enemas and she can still manage to hold it in for quite a while after I give them to her which proves to me how "good" she is getting at this. I have seen the dr. phil with the two teenage boys that sit at the TV and soil themselves and I do not want that for my daughter. I also don't want this to be a social and self esteem issue for her. I just don't understand why she would stand in the hall with her legs crossed instead of just going to the potty to get it out.I have recently teken her off miralax and make her sit for a while a few times daily to poop. Most of the time she does but sometimes I have to give her the enema. This seems to be working 100 times better than the miralax at keeping her clean which is our ultimate goal. I don't know if it will work and I will stop having to give them to her but anything is better than having diarrhea when you have trouble not soiling your pants. Has anyone else had this problem and had success with what I am doing? I know a few people that have children with this problem but they seem content just using the miralax. I feel like I have to try something else.:frowny:
  2. JJJ

    JJJ Moderator Staff Member

    What did her doctor say?
  3. lakerhart

    lakerhart New Member

    They told me to do the miralax. And I did. And it made it worse. It seemed to me like the GI was just writing something down and not looking at her as an individual. I am the one that had to diagnose her. Her doctor was clueless but when I did she agreed and sent me to the GI who also agreed she had encopresis but told me to do the same thing I had been doing that wasn't working. I am going with mommy gut instinct here after failing with the other things we've tried. I know it was stress related because her sister was born and her grandmother (my mother) died in the same year. I have read worrisome things about kids being over dosed with miralax and causing autism like symptoms so that scares the **** out of me. Ugh I wish she had come with a manual. :(
  4. moonglow

    moonglow New Member

    Wow..I am no expert on this...I do know there are many on here that struggle with this with their children though. My son, having an sensory integration disorder though was overly sensitive to not having any accidents and would rush to the bathroom in fear sometimes he wouldn't make it in time. I know some children will hold if it it hurt to go too. Flax seed oil pills can help with that too...soften the stool up so it doesn't hurt.

    I almost wonder too if food allergies could cause some children this problem. I had read in Dr. Rapp's allergy book about a child that started wetting themselves due to milk allergies. Milk allergies can cause constipation or diarrhea too. My son has had mostly constipation problems most of his life due to food allergies and allergy medication he has to take. But he has never soiled himself. I guess I would try to rule out any and all possibilities it was physical first and in the meantime try to give her praises and small rewards for when she does use the bathroom. She is young enough I think this could be turned around before it become a life long thing. I would start out keeping a food journal and write down what she eats and drinks for at least a week and note any bowel problems during this time and see if by chance you see any connections with what she eats and her having problems.

    I would also cut out milk products for a good week too...or anything else you suspect. It can take that long to get all that out of their system btw..then start her back on it and see if their is a change. I image you are feeling pretty helpless right now..:( This at least will give you a direction to go. Hang in there!

    What was Dr. Phil suggestion for the teenage boys that did this?
  5. Estherfromjerusalem

    Estherfromjerusalem Well-Known Member

    Lakerhart, welcome here. I am so sorry it is encopresis that has brought you here, but you are in the right place for support and empathy.

    My son who had encopresis is now 23 and no longer has this. I could write reams about it, but I'll just give you a few bits of advice from an old (!) lady who coped with this. My son, who was initially completely clean and dry, suddenly at the age of about four and a half started pooping in his pants. He did it all day long. It could happen 10 times a day, and 12 times a day. I won't bore you with the details about what causes encopresis, but it could be just from constipation and nothing else. In very rare cases it is caused by stress, but usually it is constipation, that causes the poop to build up, and the pressure presses on the nerves and causes them to lose the sensation that tells people when they have to go. That's it in a nutshell. It's not an illness. It's a condition.

    The first and most important thing that you have to do is make an appointment for your daughter with a pediatric gastroenterologist -- i.e., a gastro doctor who specializes in children's gastro problems. The reason for that being essential is that very occasionally there is a physical reason for the encopresis, such as a disease called Hirschprungs, which is a problem further up in the digestive tract. I had a neighbor with a child with this problem and it has to be dealt with by expert doctors.

    Once that sort of stuff is ruled out, we come to the problem of actually dealing with encopresis day to day. And it s***s, I know. Oh boy, do I know! After years of fighting with our son and not understanding what the problem was -- i.e., we thought he was doing it on purpose and that he had control, when all the time he had no control -- I found my modus vivendi with it, and it went like this: Every time he dirtied himself, I showered him (until he got old enough to do it himself), and his clothes had to be changed. Every single time. I made sure that I had an extremely good supply of underpants and pants for him. He wore only white pants so that I could soak them in bleach and get them snowy white again, and then run them through the hottest cycle in the washing machine.

    I finally got to the stage when I was no longer angry. I rediscovered my ability to hug him and to love him, and to accept the fact that this is the way he was. I found a support group on the internet for parents of children with encopresis. I had absolutely no support at all of any kind from my children's doctor. I discovered from the support group that if all else fails, they just seem to grow out of it at puberty. That's what happened with my son, at the age of 13 and a half he just stopped soiling himself. He still gets constipated to this day, but he copes with it. He is fastidious about taking showers and changing his clothes.

    I'm talking about almost 20 years ago, when this subject wasn't talked about, and there wasn't the help that one gets now with all sorts of problems. We felt so alone coping with it. We thought we were the only ones with this problem. Today I know that something like 3 percent of children suffer from it -- that's like one child in every class. There are all sorts of things, especially with small children, to help them poop in the toilet. I remember some people suggested blowing up balloons, because that causes children to press down and the poop comes out in the toilet.

    Don't give up. Your daughter needs you to love her. It's not her fault, she's not doing it on purpose to annoy you. She's probably as frustrated as you are, it's just her defense mechanisms causing her to react that way.

    I'm sure other mothers will be along to help you. Hang in there.

    Oh, and Moonglow, what a surprise to see you! Great to hear that Nate is doing so well. I can't believe he is already 13 years old. How time flies.

    Love, Esther
  6. susiestar

    susiestar Roll With It

    I am wondering if your child maybe isn't ready to be fully potty trained. I know that many say that girls train earlier than boys, but it isn't always true.

    Often our kiddos have an emotional/developmental age that is much younger than their real (chronological) age. It may be that she simply is not ready to potty train.

    Would it be easier to just rely on pull-ups or diapers until she shows you she is ready? You must WORK to be sure that this is NOT a punishment and that you do NOT get upset with her for using the pullups/diaper. You will need to be as matter of fact as possible. The more emotion you inject into this the more emotion and energy she will put into not doing what you want.

    (at least she never chased teh garbage truck for a block and a half screaming for them to bring her diapers back!! I have a cousin who's dau did that - talk about a scene!)

    Did the GI doc or his nurse discuss proper body position, etc... while gfg is on the potty? We had a nurse explain that little girls need to put their panties down below their knees or even take them off. Her knees need to be as far apart as possible. Then sit on the potty with her backs straight (not slouched). She needs to stay on the potty for 4-5 minutes. She may need a small footstool to be comfortable that long.

    You want to make this as much "fun" as you can. Maybe get a special book and read it to her only when she is on the potty? Or a new toy she can only play with on the potty (think magnetic travel game or colorforms type thing or stuffed animal). If she has a blankie or other lovey these should come into the bathroom when she does.

    At first you will give her a reward just for sitting there properly. THen for sitting there properly for 4 minutes. Then for tinkling or poo-ing in the potty. You get the picture, I am sure.

    On the posture/knees issue the other thing we were suggested was that if she couldn't keep her knees spread to have her sit facing the other way, so she is backward on the potty. It will keep her legs spread far more easily than having a parent fuss at her about it (in her eyes it will be fussing - not reminding) or remind her.

    Since the miralax seems to be too harsh, have you tried milk of magnesia? It is supposed to be a bit milder. Just ask the doc before you try it.
  7. moonglow

    moonglow New Member

    Good to see you too.

    Yea lakerhart listen to Esther on this she knows what she is talking about. I think it would be strange for anyone to go that many times a day unless something was wrong. I will go numberous times in one day (once in awhile!) after being constipated...ugh...if I went that much everyday I think I would be seeing a doctor...:( cause something is wrong...
  8. wakeupcall

    wakeupcall Active Member

    My gfg was 14 on Sat. He still has encopresis. I wish I could give you words of wisdom. We went to a pediatric gastroenterologist and she said the same things all the other doctors did. Sit several times a day, use Miralax. It never worked. He changes clothes a lot, he smells a lot....and I have no clue what to do about it. I just wanted you to know you are not alone.
  9. curlycallie

    curlycallie New Member

    Lakerheart,

    My son had the same problem for many years. We tried everything and we finally came to the conclusion that it was his poor diet. He is a very picky eater, not much in the fruit and veg being eaten by him. We found that he would eat Fiber One cereal (14 grams of fiber per half cup). He eats it everyday mixed with another kind of cereal. I also manage to get raisins down him fairly regularly. As long as he eats that daily he has few if any problems.
  10. Aprylart

    Aprylart New Member

    My 4 year old daughter has encopresis as well, and she is doing okay using Miralax and scheduled sits. We still have leakages most days (after 2 months on Miralax), but she is for the most part willing to go and no longer holds her stool to the extent that she once did.

    I know there are many others like you who have not had success. I would encourage you to join the encopresis_kids group. http://health.groups.yahoo.com/group/encopresis_kids/

    There are lots of families there going through the same thing you are who can give you ideas and encouragement. It seems that Soiling Solutions is a helpful method for many of the families who have tried everything else and found little success. http://www.soilingsolutions.com/

    April
  11. busywend

    busywend Moderator Staff Member

    Thanks for checking in Esther!

    I have no experience with this one, but Esther is our resident expert.
  12. DDD

    DDD Moderator Staff Member

    I'm not an expert on this subject but I did have my youngest grandson experience "almost" have that issue. His stools were so compacted that it was difficult for him to pass and resulted in plumbing problems as well. He moved out of our home when he turned 18 and evidently, again, has the same type of issues. For him the solutions was increased fluids, a bit of diet monitoring, reminders to "go sit" and the addition of Dulcolax (I think that's the OTC name) which is a stool softener. There were no fights or
    big confrontations. He did not like my reminders but learned to live with it. Btw, almost fifty years ago after the birth of my first baby I had such solid stools that I literally screamed when trying to get my system going. Each time after I reminded the OB to start me on stool softeners as soon as I had the baby and never have had the problem again. There is no cramping or side effects...I can attest to that. Good luck. DDD

    PS: A warm fund bubblebath relaxed his body so he often would/could
    "sit" with success afterwards.
  13. rlsnights

    rlsnights New Member

    Hi Lakehart - welcome to the board. Got a long reply for you because my son has been through a lot of medical investigation related to his constipation and encopresis.

    I will tell you a bunch of stuff that probably none of her doctors have told you to do or avoid - mostly because even though they see kids with constipation all the time they are pretty ignorant about what works when it comes to really stubborn constipation. Much of the information I offer came from the head of pediatric gastroenterology at UCLA. They have a special clinic there that is devoted to the treatment of constipation in children.

    I have a different perspective than some of the others. We too dealt with what appeared to be encopresis for over 6 months before it became clear that something more was wrong with gfg2. It turned out that he had an autoimmune disorder called Crohn's which affects the intestines.

    It is highly unlikely that your child has this but it is possible. It is also possible that she has an undiagnosed motility problem like Hirshsprungs or an allergy related condition like Celiac disease.

    That's why I second a consult with a PEDIATRIC gastroenterologist. Not an adult GI. And if the ped GI doesn't do anything to investigate your child's symptoms beyond listening, doing a brief exam and then telling you to use Miralax you might want to get a 2nd opinion, preferably at a large university hospital with a pediatric gastroenterology program.

    IMHO the ped GI should do a KUB (an xray of her abdomen) to confirm the extent of the constipation and to do a very rough screening for obvious abnormalities of the intestines, do a screening for blood in the stool and do a rectal exam - at the minimum. While you are attempting to treat the constipation, if it is long-standing then it is my feeling that more serious potential causes of severe constipation should be ruled out. I would not go more than 6 months with unsuccessful treatment. At that point IMHO the ped GI should be taking a second look at the causes for her symptoms and do further investigation up to and including doing colonoscopy.

    I would stop doing the enemas personally. As you have already figured out this is highly traumatic to your child and if there's any other way to deal with the problem I would do it. This is not a long term solution and is likely to make your child more angry and uncooperative. Above all you want to work with your child cooperatively to solve this problem. Even though she's only 4 she is probably acutely aware of the social implications of soiling and feels ashamed. So if you need someone's permission to stop - you have it.

    My son's main symptom of Crohn's was severe constipation to the point of obstipation. Obstipation is when the intestines just shut down because they are full. For a long time his ped gi at the time insisted that the constipation could not possibly be a symptom of his Crohn's and put gfg2 through many invasive tests intended to identify a motility disorder.

    They even proposed surgery to place an ostomy into my son's cecum (the part of the intestine where the small and large intestine join) so he could flush his colon daily they were so convinced it was a motility problem. Gfg2 was on 5 doses a day of laxatives and a high fiber diet at the time he became obstipated and had to be hospitalized for 6 days to clean him out. So for 2 years we went through the ringer and tried every possible treatment around except the surgery.

    Here are my suggestions:

    1. Use a combination of Miralax and Benefiber or something similar to Benefiber. What happens with Miralax is that it makes the poop slippery as you may have noticed. That's why she's having accidents on the Miralax - the poop just slides right out. When you also give her Benefiber it thickens the poop without getting rid of the slipperiness. So it reduces the chances of leakage and makes it easy for her to poop at the same time.

    2. Give her the Miralax with a minimum of 8 oz's of fluids like water or juice. Same with the Benefiber but you don't need to give them together in our experience. She needs to drink the Miralax within 20 minutes to get good effect from it. No dragging it out over the course of the morning. If she gets a snack and hasn't gone following her breakfast, I would give her the Miralax with her snack and put her on the pot afterwards.

    3. If you are not already doing so, have her sit on the toilet immediately after meals and snacks for a minimum of 10 minutes. Eating triggers the intestines to contract and move food through the system. So within 20 minutes of eating she is the most likely to need to go poop whether she feels like it or not. This should help eliminate the constipation which is your true enemy.

    You can offer her a small treat as a reward for sitting the full time. I suggest using a kitchen timer that you set and put in the bathroom with her so she knows when her time is up. She also needs something entertaining like books or a special toy that she only gets to play with when she's on the pot.

    4. As someone else said, once you have long standing constipation the bowel has been stretched out and the normal sensations that tell you to go poop are just not there. The bowel has to be "shrunk" through prevention of constipation and then retrained so the child feels and recognizes the sensations that go with needing to poop. Once the constipation is stopped it can easily take a year or more to retrain the bowel to give normal sensation signals. That's why the enemas are a really bad idea IMO. They do not help retrain the bowel and that is what is going to fix the problem.

    5. Make the following dietary changes if possible:

    Avoid constipating foods like applesauce (yes it's constipating), bananas, carrots, dried fruits or any other foods that you notice seem to add to the problem. Some people have problems with milk so you could try using an alternative like rice or soy milk. You could also try lactose free milk.

    Add food to her diet that promotes good bowel health. Give her this every single day:

    6 - 8 oz a day of apple, apricot, pear or plum (aka prune) juice or nectar

    At least one serving a day of the following fruits. They can be served raw, cooked, canned or stewed:

    apricots, pears (with the skin on), cherries or prunes

    6. If you see blood in or on her stool then back to ped gi you go with a demand that further investigation be done NOW. If she has fissures (tears in the skin around the opening) and if she has little pouches of skin called skin tags do not let the gi tell you it is just from constipation. Fissures may be but skin tags are usually signs of inflammation. And persistent fissures that do not heal are also potentially signs of a more serious bowel condition.

    7. You can massage her belly to help encourage proper motility of her bowel. The large intestine (colon) goes up the right side of the belly (the ascending colon) across the top of the belly right below the ribs (the transverse colon) and then down the left side of the belly (the descending colon). If you do some gentle but fairly deep massage you want to follow the natural formation of the bowel. so you would start on the lower right side, move up that side across the top and then down the left side. You can also do a circular sort of massage that goes in the clockwise direction.

    8. Since she is only 4 I would be using pull-ups myself. But you should have her check them frequently and have her change as soon as possible after she soils. And I would have her do as much of the clean up as she can do. Buy the flushable wipes and put a handheld shower head within her reach so she can take a shower on her own to a certain extent. You want her to take ownership of this problem - it is her body and you are trying to help her get in touch with it. This is a lesson that will serve her well all her life and it is not too soon to start teaching it.

    If you continue to have problems and get to the point that you feel the ped GI should be checking for motility problems, post to the board and I will be happy to tell you about that. Or you can probably get good info on the encopresis board someone else mentioned.

    Good luck.